Lyme Disease is apparently very nasty stuff – dad was recently diagnosed and now it’s taking him a long time to recover. One month of antibiotics seems like intense treatment, but, talking to him, despite this intensity, I get the impression that he is frustrated over the lack of concrete knowledge/prognosis of the disease that would tell him with some certainty how soon before he feels better. Initially he was told that it would take 10 days to feel better. Then 2 months. And now 2 years.
So I decided to do a bit of research on my own and see what’s up. Here is what I found:
Disclaimer: For the record, I do feel a bit silly discussing this as I do feel completely out of my depth and I feel like a lot of my thoughts are probably incredibly naive. Having said that, dad and I don’t feel like we have solid footing under our feet with respect to Lyme disease. This is wrong. This is also why I am framing the question as “How do we get to a point when a patients feels that they are getting the right treatment?” rather than “How do we cure Lyme disease?” Although I do feel that the former question can be a strong impetus towards the latter.
What is the problem? The problem is that I do not feel that dad has adequate understanding of what’s going on and is not convinced that the present course chosen is the best route forward. Moreover, he questions recommendations made by his doctor as things that do not contribute to his recovery (not maliciously so).
What I think would make him (and me) feel comfortable is knowing the answers to the following questions:
- Was the diagnosis complete? If not, what are the limits of the diagnosis. What are the cutting-edge techniques?
- What treatments are out there and how are other patients responding to these treatments? Does he fall into any specific profile? What has worked for other patients in the past?
First stop: WebMD – Lyme Disease Overview. Not terribly informative.
In the meantime, it became clear to me what I want to know:
- Present state of knowledge:
- Mechanics of the Disease
- Tracking progress/recovery
One of the main problems with combining “What I’d like to know” and the questions that I asked above is that there is a fundamental conflict: I am not a doctor. For me to understand all the details may require a significant amount of effort, for which I do not have the time. Moreover, it is not necessary in order for me to feel that proper steps are being taken. I should be able to delve deeper into a field should I feel the need to become a specialist, but this should not be necessary for me to attain an adequate level of understanding to make me feel comfortable. So, to this end, I am interested in:
- How is it diagnosed?
- How is it treated?
- What are the results? (Aggregate data)
- How does dad’s response fit into these results?
Is there anything I am missing?
Update: listing of Clinical Trials for Lyme Disease: http://clinicaltrials.gov/ct2/results?term=lyme+disease